Penny Fry is blessed with a “larger-than-life personality and hilarious sense of humor,” says her mom, Wendy Fry.
The four-year-old uses the positive forces to help in her battle with a rare, lifelong form of epilepsy called Dravet Syndrome, Wendy said. The condition is associated with prolonged seizures and developmental challenges, according to the Epilepsy Foundation of Eastern Pennsylvania. There is no cure for the syndrome.
“Every day is different when it comes to Dravet syndrome,” Wendy said. “Some days we have great fun and are able to live ‘normally’ for the most part, but some days seizures steal away the opportunity to participate in any activities.”
That’s exactly what happened on a recent weekend, she said.
Penny couldn’t participate in planned family activities because she needed time to recover from several seizures.
“It’s heartbreaking when this happens and most children are outside running around and enjoying the sunshine,” Wendy said. “We never know what to expect so we are always prepared for the worst, but hopeful for good days.”
Penny began experiencing the seizures when she was eight-months-old. Since then Wendy and her husband Greg, a consultant in the healthcare industry, have worked to support Penny in her battle and advocate for effective treatment options for Dravet syndrome patients.
For their efforts, the Frys, both 2003 Neshaminy graduates, were recently honored as King and Queen of Mardi Gras during the foundation’s annual gala.
“It was an honor to be a part of EFEPA Mardi Gras and celebrate all of the work our whole network of friends and family have done to support the epilepsy and Dravet community,” Wendy said. “We were thankful for another chance to share our story and spread awareness about Dravet syndrome and the urgent need for better research in epilepsy.”
In the United States there are about 3.4 million people battling some form of active epilepsy, according to the foundation, including 110,000 people in Eastern Pennsylvania.
The EFEPA is working to “find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies,” according to the foundation’s website.
The Frys have formed a Team “Purple for Penny” made up of family and friends.
They have participated in EFEPA walks, hosted happy hours and silent auctions, asked for donations in lieu of gifts for their children’s birthdays, run marathons, and “made countless generous contributions to the community,” according to the foundation.
The couple’s advocacy efforts have led Wendy to serve as Director of Family and Caregiver Engagement for the Dravet Syndrome Foundation. Wendy said she and her husband do not know where they would be without either of the non-profit foundations’ support for Penny and their family.
“Dravet takes all of the control from your life,” she said. “Nothing is simple and every detail of the entire family’s life is ruled by this disease. Fundraising and advocacy work have given us a chance to take control of the situation and do what we can to fight this disease.”
Despite the challenges that come with Dravet Syndrome, Penny still participates in numerous activities including ballet, gymnastics and sports clubs. She and her family will not let the condition stop her from enjoying her life, Wendy said.
“It’s scary every step of the way, from that first seizure that comes out of nowhere to the diagnosis and every heartbreaking struggle along the way,” she said. “With these low lows, however, come a great appreciation for the highs. Though it isn’t easy, we try our best to focus on happy and joyful times.”
Visit http://www.efepa.orgww.efepa.org for more information about the Epilepsy Foundation of Eastern Pennsylvania and www.dravetfoundation.org for further details about the Dravet Syndrome Foundation.
PHOTO CAP: Wendy and Penny at the EFEPA Gala